Grief is orange

One of the most troubling aspects of my autism is my inability to name or describe emotions - a condition called "alexithymia". Some years ago, a friend expressed astonishment that I couldn't name emotions. I was equally astonished that she could. But she wasn't the only one. Almost everyone I encountered could name, describe and express emotions in ways that other people found acceptable. It seemed to come naturally to them. But it didn't to me. 

Wordsmith that I am, I know hundreds of words describing emotions. They buzz around in my head like a swarm of bees, inviting me to pick one. But I don't understand them. They are just words. They don't meaningfully link to what I am feeling. I don't know which one to choose, and I end up confused and overwhelmed (yes, I know these are emotional words, but they are for you, they don't describe what I actually feel).

For some reason, my friends had learned to name and describe emotions in childhood, but I had not. Why, I did not know. I had learned the words, but never connected them to feelings. My non-verbal expression of emotions upset people, but I had no other means of expressing what I felt. And I still don't. 

My therapist gave me a framework that he thought would help resolve my confusion and make it easier for me to express emotions verbally. He restricted emotions to four: grief, anger, fear, happiness. Pick the one that best represents what you are feeling. The restricted list does help in one respect: it reduces the clamour from all those words demanding that I pick them, which helps me to remain calmer - if I remember to use the list. But it's still just a list. I do not know whether the words I choose actually represent what I feel. And sometimes the words are simply inadequate. A restricted list doesn't help when you are being asked detailed questions about how you handle emotions in yourself and others. 

During my autism assessment, there was one particular question, which I think was about fear, that I could not find words to answer. Overwhelmed with a ghastly feeling which I could not begin to describe, I fell silent.

But although I could not find words to describe it, I could see what I was feeling. I looked deep into myself and contemplated it. It had colours, and a shape, and texture. I could not tell my assessor - or you - what that emotion was, but it was a swirly elliptical shape, oriented northeast - southwest with a depression in the middle, made up of an unpleasant mixture of dark browns and dark blues with a lacy tracing of white. 

I don't know why I never realised before that I see emotions in colour. After all, I see so many other things in colour. Maybe I was so desperate to find the words to describe them - to be normal - that I ignored my own, highly visual experience. Or maybe I was too busy trying to run away from them. In that psychologist's room, I couldn't run away. I had to stop and look. And for the first time, I let myself see. 

I've since realised that other emotions also have colour, and texture, and shape. Mostly, I don't know what the emotion is, I only know what it looks like. So I can't tell you what I am feeling. Maybe I should paint it. 

But there are signs that now I am finally recognising emotions as visual objects, I am beginning to connect what I see with some of the words that buzz around in my head. 

Recently, it dawned on me that my autism is sufficiently severe to be a serious disability in the workplace, and that this may make the safe, well-paid employment for which I long impossible. 

As I contemplated this reality, I was overwhelmed with - orange. My head filled with various shades of orange, in a geometric shape which was almost a square but with the two top corners cut off, with lines running horizontally and vertically through it. The orange shades had a texture almost like muslin: diaphanous, and with visible threads. And where the corner was cut off at the top left, there was a dark green spike, like broken glass, against a brightly lit, faintly blue background. 

And two words came to me. Grief, and loss. Not the grief of bereavement, but grief for the person I might have been, and for the loss of hope. I hoped I could change. Indeed I clung to the belief that if only I tried hard enough I could change, that I could learn to name and express emotions in a socially acceptable way, to handle social interactions better, to cope with uncertainty and change. To do jobs that involve dealing with people. To be a good "team player", since that seems to be expected of women in employment. But autism is permanent. There is no cure. That is my loss, and my grief. It is orange, and green, and the light shines through it. 

I also discovered that music, which as you know I hear in colour, can change the colour of emotion. I was sitting in the car listening to Brahms's first symphony. At first it had no effect - but then the key changed, and the orange in my head gave way to a deep calming purple. And I immediately felt better.  

You'd think that orange would be a happy colour. But not in my world. Grief is orange. 

What's the use of a diagnosis?

"What are you going to do with it?" asked a friend of mine when I told him about my autism diagnosis. It seemed an odd question. What does anyone do with a diagnosis of a lifelong incurable disability?

In truth, I don't know what I'm going to "do with it." 

I originally thought it might help me find and, importantly, hold on to stable employment. But on reflection, I'm not sure it will. In fact it might make it considerably more difficult. I already had two characteristics that tend to put off prospective employers, namely my gender and my age, and I have now added a significant disability. Of course, the law nominally protects me from discrimination on all of these grounds: but there is a vast gulf between the law and reality. I discovered after my diagnosis that only about 20% of autistic people are in employment. The rest are either precariously self-employed, like me, or living on benefits. What a tragic waste. 

But although I do need a stable well-paid job (more on this shortly), that wasn't why I got the diagnosis. I asked for a diagnosis because I needed to know. Many people self-diagnose, not least because NHS waiting lists for adults are years long and private diagnoses are costly. But for me, self-diagnosis was not enough. I needed a formal diagnosis to quell my own self-doubt - to silence the critical voice inside my head that insists there's nothing wrong with me and I'm just being dramatic. I do my best to ignore this voice, but at times it is very, very loud. I thought that if I could wave a formal diagnosis backed up by a detailed report, it would shut up. How wrong I was. 

"Everyone is a little bit autistic," said my friend. I felt as if he had torn up the report and scattered the pieces on the floor. "See, you're making it up," shouted the voice in my head. 

I know my friend is wrong. Research shows that there are significant differences between autistic brains and neurotypical brains. But my assessment did not include brain scans. It was done purely on the basis of self-reported and observed behaviour. The report says that my self-reported behaviour is "clinically significant", suggesting autism, on almost all criteria, and my observed behaviour, on a clinical severity scale, indicated "moderate autism", though it does not explain what this means (I have asked for an explanation). But I do not know whether my brain is actually different from that of neurotypical people. So although I know my friend is wrong, his words cast doubt - again - on the reality of my autism. 

Why did I tell people about my autism? I could have kept quiet, or just told a few close friends. But I seem to need validation from other people. I need to be believed, because otherwise I won't believe myself. The trouble is that, as I have discovered, there's no guarantee that people will believe me, even with a formal diagnosis. I now realise I should have been a lot more careful about whom I told. 

It's astonishing how many people will cheerfully gaslight someone with late-diagnosed autism. They wouldn't question a diagnosis of, say, a congenital heart condition. Nor would they say "everyone has a little bit of a congenital heart condition". But they apparently feel it is perfectly ok to tell someone they aren't really autistic, or that "everyone is a little bit autistic". 

Anyway, I'm not "a little bit" autistic. I'm significantly autistic and I also have ADHD. Perhaps surprisingly, I'm not angry that this wasn't discovered earlier. In fact I'm rather pleased with myself. A child diagnosed with moderate autism and ADHD now would be given substantial support, and an adult would be able to request reasonable adjustments to help them cope in the workplace and would be protected from discrimination and harassment. I have had no support, no adjustments and no protection. Instead, I have been bullied, punished and driven out of work. But I have survived. That's something to celebrate. 

To my surprise, the immediate effect of having a formal diagnosis was to give me permission to feel exhausted. I hadn't realised how tired I was... I had been doing less and less freelance writing, because I found it draining. However, it had become my main source of income, so I was reluctant to give it up. But it left me with no energy to write my own blog, or do any singing, or even read a book. And the thought of pitching ideas made me feel sick. So when my freelance work evaporated completely in April, it was something of a relief. But ever since, the voice inside my head has been nagging me to get a job. So the diagnosis has already been helpful. Taking on a new job when I'm still utterly exhausted from the last one is a very bad idea. 

I will have to find a job at some point, because my savings aren't limitless and although I'm earning some money, it's not enough to live on. But it's not urgent. For now, I need to rest, and read, and sing, and do the garden, and write pieces like this, and rediscover the fun of writing finance and economics stuff. And finish writing the book that is now two years overdue because I couldn't find enough energy to complete it. Eventually I expect I will be able to work again - though I doubt if I will ever again do as much freelance writing as I used to. 

Looking back, it's evident that during my adult life, and probably during my childhood and teenage years too (my awful school reports suggest this), I've suffered repeated episodes of autistic burnout. I've written about some of them on this blog - interestingly, I labelled them "Slow burnout" long before I even suspected I was autistic. I usually managed to get myself out of the job or situation that was causing the burnout, and resist finding another job until deteriorating financial circumstances forced me to do so. And I've just unwittingly repeated the same pattern. 

The question is whether, knowing what I now do, I can break the cycle of overwork, exhaustion and burnout. I will need a lot of support - it's not easy to break the habits of a lifetime. I've joined an autistic women's group, and I shall look for other sources of support. Above all, I will need the help of friends: the long-standing, loyal friends who didn't turn a hair when I told them I was autistic, and the new friends I'm sure I will meet as I travel along this strange yet oddly familiar road. 

Related reading:

Slow burnout series (to find these posts, click the "Slow Burnout" label on the sidebar)

Diagnosis

 

When bubbles burst

I'm writing fewer posts than I used to. Earlier this year, this was due to a heavy freelance workload. But recently, it has become much more than that. I'm finding it very difficult to write, because I no longer trust my own ability. I have a crisis of confidence.

My confidence crisis started about six months ago, in the sequence of events that led to my resignation from Pieria. In March, I was asked to write six posts of a 10-post series of "think pieces" for the Design Council, which would be published on Pieria and Medium. I was at the time sole editor of original content on Pieria, but this series was to be separate from the main site and would therefore be under the control of the Design Council's appointed editor.

I'm not going to go into details about exactly what went wrong. Suffice it to say, that I only completed one of the six pieces. The first draft was sent back for changes and further research, and I produced a second draft a few days before going to Washington for the INET conference on 6th May. The initial feedback from the Design Council editor was "It's GREAT". So off I went to Washington believing that the piece was complete.

On 6th May, while sitting in the IMF conference hall listening to Christine Lagarde, I received an email from the commercial director at Pieria. The email informed me that the Design Council editor had rejected the completed piece, on the grounds that it did not match the style of other pieces in the series that had already been completed by another journalist. He had also killed the second piece that I was in the process of writing, and had demanded that I be removed from the project.

To say this was a shock was an understatement. I desperately needed reassurance, so I sent the rejected piece for independent editorial evaluation. The response was amazingly positive. I also sent it to my co-editor at Pieria, who was also positive. On that basis I took the decision to publish the piece on Pieria on the main part of the site (unconnected with the Design Council series), under my own by-line and with a different title.

Unfortunately that decision turned out to be disastrous. The commercial director, presumably concerned that the Design Council would object to the piece being published when they had rejected it, refused to publish it. It remained hidden in the editorial section of the site. Not only that, but all my other work was wiped from the front page of the site, including guest posts I had published on behalf of others on my own profile. This was the action that caused me to resign. I no longer had confidence that any work I did would be published. My position was untenable.

Pieria was a terrible loss. However, I expected that my freelance work would continue. But it didn't. Over the summer months, it all but dried up. Publications for which I had done a lot of work over the previous year stopped commissioning me to write for them. At first I thought this was just a seasonal slowdown, and things would pick up in the autumn. But summer turned to autumn, and no more work appeared.....

Fortunately, a friend of mine recommended me to work with an agency on a content development campaign for a well-known financial services company. I submitted a portfolio of my work to them, which the senior managing editor said was "outstanding". On the strength of that and my editorial experience, I was interviewed for the editorship of the campaign. Unfortuately I was passed over in favour of someone who knew the platform better. But I happily agreed to write for the campaign.

To start with, things appeared to go well. I was assigned my first piece at the beginning of September and completed it on time. Other pieces followed.

But then the edits started....

I discovered that every piece I wrote was being substantially revised or rewritten by the editor. When I asked why, I was told that my writing was "dry and pointless". Apparently I was the worst writer on the campaign. Just as I had been on the Design Council campaign for Pieria.

I don't know what to believe any more. I thought I was a good writer. But the feedback I've been getting in the last few months says otherwise. Maybe I've been misleading myself about my ability.

I started writing because I believed I had something useful to contribute. But perhaps I don't. Perhaps this has all just been a bubble, and now the bubble has burst....

When bubbles burst, they cause widespread confusion and chaos. My bubble is no different from any other bubble. So I am confused, and my mind is in chaos. I no longer trust my judgment about my writing, or anyone else's for that matter. How can I, when pieces that I think are good are heavily revised, rewritten or rejected?

I don't know what I'm doing any more. I don't know where I'm going. I reduced my singing teaching substantially, partly for health reasons but partly to make room for writing. The writing seems to be leaving me, and the singing teaching is not returning - not that I really want it to, but at least it paid the bills. I have no idea how I will survive.

 It all seems so unfair. I've worked so hard, but working hard is not good enough.

Constantly in the back of my mind is a comment I read once about bloggers, that they stop blogging when they run out of things to say. Have I run out of things to say? No, but I seem to have run out of the means to say them.

I never expected to reach this point. But does anyone ever expect a bubble to burst?

The broken contract

So the Lord God said to the serpent, “Because you have done this,

“Cursed are you above all livestock
    and all wild animals!
You will crawl on your belly
    and you will eat dust
    all the days of your life.
And I will put enmity
    between you and the woman,
    and between your offspring and hers;
he will crush your head,
    and you will strike his heel.”

To the woman he said,

“I will make your pains in childbearing very severe;
    with painful labor you will give birth to children.
Your desire will be for your husband,
    and he will rule over you.”

To Adam he said, “Because you listened to your wife and ate fruit from the tree about which I commanded you, ‘You must not eat from it,’

“Cursed is the ground because of you;
    through painful toil you will eat food from it
    all the days of your life.
 It will produce thorns and thistles for you,
    and you will eat the plants of the field.
 By the sweat of your brow
    you will eat your food
until you return to the ground,
    since from it you were taken;
for dust you are
    and to dust you will return.”

This is from the story of the Fall in Genesis chapter 3, and it has fascinated me for a long time - and particularly now. For I believe we are at the end of this story. We stand, as never before, at the point where this broken contract can be made new and its terrible consequences consigned to the dust of history.

The Fall essentially is the story of the change from predominantly hunter-gatherer societies to farming communities. The "garden" is the abundant landscape that our hunter-gatherer forbears inhabited: the fruits of the earth were there to be picked, without effort and without pain. It is a beautiful picture expressing the nostalgia of the people who had abandoned that lifestyle in favour of one which gave them more control of production - enabling them to plan, and perhaps to save, for the future. And even more importantly, gave them the ability to expand the population far more than could be supported by a hunter-gatherer lifestyle: indeed, the need for workers to cultivate crops made population expansion essential. The writers of this story look back at the hunter-gatherer period as a golden age: they do not choose to remember the frequent episodes of starvation, or the need to move around constantly as sources of food were depleted - as is still the case in nomadic communities today. 

This is what the Fall tells us. For the first time there would be a hard division of responsibilities between men and women. Men were to till the ground and make it produce food for the growing population: the work would be physically demanding and painful, and nature would fight back against the rape of its resources. And the principal food that would be available at this time would be "the plants of the field" - i.e. crops. Not fruits, as had been the case before the Fall. The poignancy of Jesus' prayer to "give us this day our daily bread" should be set against the backdrop of the Fall: no more would food be simply there for the taking. It had to be earned through hard work. There is evidence that the diet of early agricultural communities was less varied and less nutritious than the diet of their hunter-gatherer predecessors. Food could be produced in greater quantities, but it was not necessarily of better quality.

The consequences for women were far-reaching. Far from being the equals of men, they were to be in a subservient role. And their principal job would be to produce children - the future workers needed to till the ground and cultivate crops. This work would cost them similar - or greater - pain and effort to that experienced by men in providing food. 

So the Fall outlines the new contract between men and women, and between human beings and nature. Men were to produce the food in the present, providing for women and children. Women were to produce the workers who would produce food in the future. And nature would fight back against the efforts of both men and women. Conflict, inequality and suffering would be the hallmarks of the fallen world. 

Since woman's primary job was to produce children, barrenness was a terrible thing. In many societies, barrenness was (and is) grounds for divorce. After all, why should a man provide food for a woman who is not keeping her side of the bargain? If a woman could not produce children - ideally sons, who would produce food in the future - she was worthless. And equally, a man who was disabled or sick was worthless, since he was unable to produce food for his family. 

This division of responsibilities has shaped human society in much of the world: most religions have something akin to the Judaeo-Christian legend of the Fall. The imperative to "multiply and fill the earth" has driven men to limit women's access to jobs, education and healthcare in case they choose to do something other than having children. And with good reason. The evidence is that when women have access to education, when they are able to work to support themselves rather than being dependent on men, and when healthcare is available for themselves and their children, they have fewer children. Considerably fewer, actually - to the point where birth rates barely achieve replacement level.

The drive to "multiply and fill the earth" has caused the human race to expand to a point where it dominates nature. Human activity destroys ecosystems around the world. Human use of fossil fuels contributes to climate change. In short, human behaviour now threatens nature. 

To me it is no accident that this point has been reached at the same time as women around the world are starting to choose other paths. For the human race actually has no further imperative to expand. It has reached its natural limits and now needs to contract down to a more sustainable level. And it is women - in choosing not to have children - who are driving this change. But in making that choice they are breaking the contract between men and women that was established at the Fall. For according to that contract, a woman choosing not to have children is equivalent to a man choosing not to work. It is a fundamental breach. No wonder powerful religious and social institutions - all male-dominated - are fighting back, trying to prevent women gaining access to the education, the jobs and the healthcare that enable them to make that choice. It is all about preserving that contract: the dominance of men, the subservience of women....the responsibility of men to provide food in the present (and women to be dependent on men).....the responsibility of women to provide workers for the future (hence prohibition of contraception and abortion). And by extension, of course, about preserving the damaged and antagonistic relationship between humans of both sexes and the natural world. 

On the other side of the fence, men too have the opportunity - as never before - of choosing whether or not to work. We have abundance in goods: we no longer need men to struggle "by the sweat of their brow" to provide food for their families. Food can be produced at little or no cost. Yet we are still obsessed with the idea that people must work in order to eat: we make a virtue out of unnecessary and unproductive work, we force people to do degrading and menial work in order to qualify for food stamps and we castigate those who choose not to work. But work itself is increasingly in short supply, because we no longer need the jobs that men in particular have traditionally been paid to do. It is no accident that the biggest rises in unemployment have been among men, particularly the young unskilled and older production-line workers. 

So women are choosing to break the contract - and men are being forced to do so. A man who can't find work isn't able to support his family. Many men find this degrading, because for so long we have valued men by their ability to work to support their families.  

The contract of the Fall has been with us for so long that we have come to see its provisions as virtues. So when those provisions seem to be breaking down, we see it as a moral failure. The gradual disappearance of traditional marriage; the emergence of new, more fluid forms of human intimate relationship; the severing of the relationship between marriage and procreation, and between sexual activity and procreation; the inability and/or refusal of some people to do degrading and menial work; all of these are seen as evidence that the moral foundations of society are breaking down. But if what is breaking down is the old contract established as a consequence of the first moral failure, why should we resist that change? After all, if conflict, inequality and suffering are the hallmarks of that contract, why would we wish to keep it? It surely isn't good enough to justify keeping a contract born of pain and maintained through suffering purely on the grounds that the alternative might be worse. It is up to us to work out what a better contract might look like - one more appropriate for a world in which women can choose whether or not to have children, and men can choose whether or not to work.

The values we attach to men and women are changing. We no longer value women by their ability to produce children, and in particular sons - at least in developed countries we don't, though in poorer areas of some developing countries this view of women may still be current. And we need to stop valuing men by their ability to work and produce - in particular, by their ability to "make stuff". Making "stuff" increasingly isn't done by the hard work of men. It's done by robots. The traditional role of man as "provider" is becoming obsolete. Both men and women now are becoming primarily nurturers, of each other and of nature, and creators of clever and beautiful things.

This is tough for many people, both men who feel emasculated by taking on nurturing roles that have traditionally been done by women, and women who feel threatened by men taking over some of their caring responsibilities. In some ways the attitude of women is even worse than that of men: women who regard men who work in nurturing roles as "not real men" can do immense damage to the self-esteem and capability of those men. But to some extent the fears of both sexes are understandable. If they are both now to be nurturers and creators, how will they divide responsibilities between them? There are no clear guidelines any more. The social roles of men and women are no longer clearly delineated. They must negotiate with each other - and that requires them to communicate openly and honestly as never before. The story of the Fall is one of lies and betrayal: Adam blamed Eve, Eve blamed the serpent, God - exasperated by their refusal to accept responsibility - threw them out of Eden and locked them into a contract in which all three paid for their crime. So the new contract must be founded on honesty, openness and willingness to accept responsibility.

Much of the female suffering caused by the Fall has already been alleviated in developed countries, although there is still a long way to go in developing countries. Due to medical advances, pregnancy and childbirth are no longer the painful and dangerous experiences that they used to be, and due to improvements in sanitation and nutrition and the introduction of universal healthcare, infant mortality is very low. Women no longer need to have lots of children to compensate for those that will die: they no longer spend most of their childbearing years either pregnant or lactating, and although in many families women remain principally responsible for childcare (reinforced by government policies emphasising the importance of mothers and downgrading the significance of fathers), this too is changing. For some time now, government statistics have shown a decrease in women who claim to be "economically inactive" because of caring responsibilities, and a corresponding increase in men. We are gradually moving towards a more equitable share of domestic and childcare responsibilities between men and women. And we are also becoming more aware of male bad behaviour: domestic abuse remains a considerable problem, but at least it is now recognised as a crime and there is some help available for women experiencing domestic abuse. As a society, we are becoming less tolerant of male domination and female subservience, especially when enforced by brutality. This is progress.

In developed countries, the sort of male suffering envisaged in the Fall no longer really exists. We simply don't plough fields or harvest crops by hand any more. Farming is high-tech and intensive, and increasingly dehumanised. And other jobs that involved suffering and danger for men, such as mining and fishing, are also becoming high-tech and dehumanised. Men now need to use their brains, rather than their brawn, in their productive work. And because women's brains are as good as men's, and women no longer need to spend all their time caring for children and doing housework, women and men can now share productive work as never before.

But there is still a long way to go, even in developed nations. The Fall created institutional inequality. Women became dependent on men: men controlled financial and physical resources and held the reins of power. Even now, powerful social positions are far more frequently occupied by men than women. This is beginning to change, but nowhere near fast enough. If true equality based on mutual respect is to be achieved, there must be greater representation of women in powerful positions, and the world of work - currently organised to suit white Western males - needs to be fundamentally reformed.

And we have not yet really addressed the desperate need for humans to develop a more harmonious relationship with nature. Perhaps this is not really possible while the relationships between humans remain disrupted. A new model of human relations founded on equality and collaboration, rather than inequality and competition, must come first, and a new model of shared productive work: then, when humans are healed of the disruption caused by the Fall, men and women can together exercise their God-given responsibility to be stewards of the natural world, conserving and protecting it and using its resources wisely.

Related reading:

The changing nature of work - Coppola Comment
A woman of our time - Still Life With Paradox
Accepting inequality - Stumbling & Mumbling
We need quotas for women at the top - Richard Portes (Pieria)

Genesis 3, NIV - Bible Gateway